First off, I’m sorry. This sucks. Pain is never fun. That said, I’m here, in part to help you fight your brain. And the system.

Now…what do you need to know?

1. Get a neurologist. Talk to your family doctor and see who she recommends. Look up docs in your area on http://www.achenet.org/resources/healthcare_professional_search/ and other headache organization websites. (Note I use migraine and headache interchangeably in this post because I have both. And most docs who are interested in one are also in the other, etc.) Look these doctors and clinics up on the web to find out what their reputations are. Make sure that the neurologist you see is interested in headaches. Headaches are a frustrating type of illness and one that can be frustrating to treat because it’s easy to get discouraged because there’s no progress. A good doctor will see your brain as a puzzle that needs to be solved and will keep seeking solutions beyond the obvious.

2. Buy and read The Migraine Brain. I’ve read a lot of books about migraines and headaches in the past 6 years and this is by far the best. The author made me want to move to Boston so I could be a patient of hers. (And I have a pretty awesome treatment team here.)

3. Keep a migraine diary. These are a simple tool that can help doctors learn more about your symptoms, help you track things like medications and events, and just generally provide more data. (I’m a big fan of having data.) My neurology clinic provides checkbook sized booklets that hold 12 months of data in a calendar form.

Here’s a random month of mine. (The extensive circling is by my neurologist.)

Every day I’ve written a number, my pain level for that day. If it shifts dramatically, I draw an arrow to the new pain level. I record any non-standard meds I took, any procedures I had, and if the headache was odd, I’ll record what was different about it. This has been a wonderful tool, especially when working with two medical teams that have access to different slices of my data. (So this morning when my dentist wanted to know if a drug that I was taking was a culprit in my recent teeth grinding, we could look at dates, not guesstimate.)

4. Talk to people about it. Your migraines can’t be a copout for everything, but my coworkers no longer look at me strangely if I’m wearing sunglasses at my computer or lying under my desk in darkness.

5. Make use of your network. If you know people who have (or might have) been on the meds you are taking, ask them what they thought. Ask them about surprises. (My big one was the numbness in my legs when I took Topamax.) If your doctor is awesome, as mine are, they may be able to help you avoid nasty side effects or at least warn you about them. (Turns out increasing potassium via food, while on Topamax, helps reduce the numbness.)

6. Be patient. Again, it sucks, but most of the meds will take at least 1 month to kick in, and perhaps another 3 months to be able to evaluate. And don’t try to cheat the system by starting multiple medications at the same time, that just confuses things.

7. Recognize that there may be days when you just need to sleep it off. To lie in bed all day and wake up only to eat some food. Preferably ice cream and cookies.

8. Become a detective. Got a migraine today? What did you do differently yesterday? (And then either don’t do it or know the consequences.) I got migraines after several events with strobe lights. Putting it together I could track my migraines way back to middle school, not just prevent future ones. This has changed how I watch movies and means that sometimes I know I just have to cover my eyes and wait for the scene to be over. If I drink caffeine, I’ll pay tomorrow. And the next day. And maybe the next day. It takes a while to figure out these triggers, but paying attention to them helps.

9. Finally (for now at least) and most importantly, realize that you are in charge. Not that this is in your head. (Well, I guess it is, but it’s physiological, not psychological.) But that you are your own advocate. If you don’t like your doctor’s advice, talk to another doctor. If the side effects from the medication have you feeling like your brain is full of cotton balls, tell someone! My team has been more than willing to help me, but I have to ask for the help. And sometimes to demand it.

Sometimes my migraines get really bad. I know they’re bad because I start screaming and sobbing and trying to convince Ben that it would be a good idea for me to run into a wall, full speed, with my head.

In mid-January, I realized I had a horrible, nothing-will-fix-this migraine. At 9pm. Urgent care had closed, so I decided that I would just give myself an imitrex shot. 99% of the time, the imitrex shot makes me pass out. I have to inject myself while lying in bed. I need to have water next to me and I need to have gone to the bathroom. I cannot walk, I have a hard time talking, and breathing is difficult. Except this time. This was the 1%. The imitrex shot did nothing. 45 minutes later and the pain was worse and I was still awake. Usually I have narcotics for times like this. But I was out.

So after sobbing and having Ben distract me by telling me about his new motherboard and graphics card, I decided I had to go to the ER. Last time I’d gone was over 15 months earlier. I had spent over 3 hours waiting and then another 3+ hours being treated.

We went to the same ER. I was worried because it was sleeting and I figured there would be lots of car crashes. But we got there and were taken back within 45 minutes. Within 15 minutes after that I’d seen a nurse AND the doctor. The doctor listened carefully to my request (PLEASE DON’T GIVE ME Benedryl and Compazine in the IV. They give me the creepy crawlies). Then he ordered three drugs (including not compazine) and wanted to try putting me on high-flow oxygen. He’d read about this treatment recently and it wasn’t a hardship for me, so I didn’t complain.

The nurse tried to put in my IV and failed. Twice. So she called a tech, and the doctor asked her to start my oxygen ASAP before the IV went in. Then the doc came into check on me about every 10-15 minutes. Usually the doc gives orders and doesn’t appear again until well after the bag of saline has flowed into my veins. At one of the checks, I mentioned I needed to go to the bathroom and he had someone help me and also asked about my pain. Since it had drastically reduced, he said he’d discharge me. Immediately. Even though I was only 1/3 of the way through the saline drip.

I rejoiced. Door to door the trip took under 2.5 hours. And I could sleep afterwards. Three cheers for Dr. Robert B. Jones of Southdale ER! Thanks for making the usually unpleasant experience so much nicer.

Hello Again! I thought I’d start off January with a super upbeat post! 😀

When you live in chronic pain, it changes everything. I think I’ve had 3-5 days in the past 1.5 years that have not involved a headache. My pain tolerance has gotten higher, but other things have changed too.

Last night I couldn’t sleep. Too much pain. I decided it was my headband (that tracks my brainwaves. I’m that cool), so I took it off. But that didn’t help. So then I decided it was because of my mouthguard, so I took that out. Still pain. I contemplated running into a wall, but decided against it. I tweeted at my brain that I was mad. Despite the pulsating pain behind my left eyeball, I still managed to get to sleep after about 1.5 hours of lying in the dark in pain.

Then my alarm went off this morning. When I wake up with pain, to me there is a clear solution. I should stay underneath the warm covers and go back to sleep. Or, if I’m hungry, I should get up, eat breakfast, and then huddle under the covers and fall back asleep. Back to the world where I only feel pain when I wake up.

I tried that today. I got up and ate and curled back up under the covers to contemplate whether I could handle a bus to campus and back, as well as 2.5 hours of class. I decided to tough it out. I showered (sometimes that brings relief, but not today). And headed out. The pulsing behind my eye had moved up to halfway between my ear and my eye. My right lobe was also chiming in once in a while, worried about being left out.

Now, as I sit hear writing, I am in pain. And I will go home and lie down and it will get a bit better, but I know that I’ll struggle to sleep again tonight. And that, most likely, I’ll wake up tomorrow in pain…again.

What do I do? Hope the pain decreases instead of increases. Hope that my doctors have new plans for me next week. Hope that I have some good distractions (B, music, movies, tv, puzzles, design work). Hope ’til I can’t hope any more and then wake up again tomorrow.

I haven’t written about my personal migraines lately, but they’ve been getting worse. Bad enough for me to decide to try out Botox for Migraines. I was scared silly about this. I knew that most people had significant pain with the Botox and my neurologist mentioned when she had it she heard crunching. That alone made me terrified. At the same time though, I am sick and tired of migraines and ready to try something new.

So at my August appointment, I talked to my neurologist about moving towards Botox. She set the wheels in motion for me to get it done. First, my insurance had to approve it. My insurance says the following about Botox for migraines:

“Botox requires a prior authorization but will generally be approved when the following criteria are met:

1. Chronic migraine (defined as >= 15 headache days/month lasting >=4 hours a day) despite standard treatment including three or more preventive treatments (e.g., amitriptyline, topamax, verapamil and betablockers) or medical contraindications to one or more of these therapies.

2. Prescribing by a headache specialist who has received training in the injection technique.”

I have been on three (now four) preventative treatments. None of them have done much. So I figured approval would be no problem. FALSE. It took over 6 weeks for my insurance to approve me for treatment. But they did on October 7 and notified me (and my doctor) on October 13. I immediate called the “neurotoxin scheduling line” to schedule and they were able to get me in on October 18 (instead of the 3 to 4 months I’d been told to expect).

So I started reading. And I became even more fearful. All the forum postings I read were apparently from people who’d had horrible experiences. The side effects seemed scarier than normal. (See http://www.allergan.com/assets/pdf/botox_pi.pdf) And I didn’t understand how it worked.

“Botox for migraines helps to weaken or paralyze the hyper activated muscles by suppressing the release of acetylcholine, which mainly causes the transmission of nerve impulses at synapses and myoneural. This treatment can also be used for reducing the pain associated with the cervical dystonia, achalasia and rectal fissures. Botox is usually injected directly into the affected muscles.

There are different theories to explain the working of the Botox for the elimination of migraine headaches. According to one theory, as tension and spasms are the main causes of migraines, Botox eliminate the headaches by eliminating the muscle tension. It is also believed that Botox reduces the headaches by inhibiting the transmission of nerve cells. According to this theory headache is caused due to the increased amount of signals send by the nerves.”

AND REMEMBER THAT THIS IS A NEUROTOXIN. That in other forms KILLS PEOPLE. BEING INJECTED INTO MY HEAD. OMG! THE TERROR. Seriously. I was freaking out. So I made Ben come with me. (Plus it was in the uber-burbs, so I had to take his car or he had to take it!)

I met with a very nice doctor (not my normal doc, she doesn’t do botox injections) and his medical student from UMN. They talked to me, having already reviewed my files, and looked over my headache diary. The fact that I’d never had a single day in the past year that was pain-free without medication was almost shocking to them. They said that it sounded like I had little to lose and lots to gain. Then they examined me, testing how well my head moved, where I was tense and confirming where my headaches were. (My headaches are on both sides of my frontal lobe, btw.)

Then they went to talk and I went to the actual doctorish room (instead of an office with a zombie book on the desk). Then they started with the shots. I actually had to lie down because I’m too tall (albeit NOT EVEN 5’11”!!!). Then he took his gloved hands and started injecting me.

Here’s where I got shots.

From the front. I got 7 shots.

From my right: two shots.

From my left: two shots.

He chose these locations based on the stiffness and soreness in my head. He felt that my neck wasn’t tense enough at this point to inject it. That’s something we’d consider a second time if this doesn’t work very well.

It hurt very little. Less than my flu shot last week. (Although the doc kept dabbing something off my face. Blood? I had no sounds that were gross or anything.

I won’t see the effects for another 1-8 days, but I’m feeling better this afternoon than I have in a few weeks. (This morning was miserable, but…) It’s supposed to last for about 3 months. If I get 1/3 fewer headaches for 3 months, it’s worth it to me. It was definitely an experience though. I’ll keep you updated!

The keyboard tray hasn’t been installed yet. The laptop stand is awesome and is at work, as is the trackball. The keyboard and vertical mouse are at home. Instead of a laptop stand at home, I’m propping up my laptop on several copies of Harry Potter.

Part of the idea was to decide whether I liked the vertical mouse or the trackball better. The trackball definitely wins (for me) I’ve been using it with my left hand and I love it. The keyboard is also something I’m enjoying. There’s a way to prop it up so that it has a negative slope, which is better for my wrists. I’ve never had a split keyboard either but I enjoy this one.

Eventually I should also have a new desk chair at work as well, but that’s something to tackle another day.

Yesterday I got a notice that my health insurance was cancelled retroactively back to September 1. After many tears, I sent an email to clarify and learned that it was nothing that was my fault, but rather the people who are supposed to pay my premium hadn’t paid it. Another few emails and it’s theoretically being taken care of. But that’s not why I’m writing.

I had a horrible migraine that was getting worse by the minute and all I could think of was, there’s no where I can go for help. I can’t afford anything. Already, since Sept 1, my insurance company has been billed more than 25% of my annual income. They probably only paid half that, but still, for me that’s a huge sum of money. (I don’t earn much, but I’ve seen a lot of docs and gotten a lot of meds in the past 2 months.) So while I’d normally go to the urgent care, I couldn’t. I could’ve also gotten a refill of a prescription that might have helped with the migraine, but I worried about the $300 price tag. It turned the way I think upside down.

All of a sudden I thought I’d have to cancel my appointment with my neurologist next Wednesday and my physical therapy that afternoon. But how could I handle my migraines without my neurologist? (Seriously, I love my neurologist(s). They rock. Everyone I’ve interacted with at that clinic is awesome. They even wished me a belated happy birthday the week after my birthday. That’s how cool they are.) My mom was reassuring me that everything should be worked out by next week, but the truth of the matter is, without insurance I couldn’t get almost any of the care I’m getting. This fall I’ve seen doctors for three things: migraines, carpal tunnel, and ankle problems. The migraines don’t result in many visits, but the visits I have are expensive and the medicine is pricey. The carpal tunnel and ankle problems both resulted in 8+ weeks of physical therapy and the ankle problems also led to me needing new orthotics. So if I didn’t have insurance, my vision of myself this fall involves massive amounts of pain, from my head, wrists, and ankles. (Yeah, I know, I’m falling apart…)

I know that I’m lucky. I grew up with health insurance and have never had a day without it (that I know of). That’s a lot more insurance than many people I know. But I’d also never envisioned a day without it. The fact that I can’t comprehend my life without it is a wakeup call to me, showing me how privileged I am that I can, through the grace of insurance, afford this care. This is not meant to be a political rant, I’m not talking about universal health care. I know that some of you have insurance and some of you don’t. And I hope that most of you don’t need it very often, but for me it is vital. That’s something that I hadn’t fully realized until yesterday.

I was thinking about this tonight as a set of massive thunderstorms rolled through towns. What do I miss about my life pre-2006 diagnosis of migraines? And, the opposite question, what do I like more about my life?

(Neither list is ordered or complete)

First, the negatives — what do I miss about “normal life”?

1) I miss being able to watch thunder & lightning storms without thinking that the lightning is going to look like strobe lights to my brain and my brain is going to react by going into migraine mode.

2) I miss being able to drink a Coke or Mt. Dew now and then. And to not have to worry about whether or not my root beer has caffeine in it, because if it does, I’ll pay later.

3) I miss being able to hang out with friends and drink wine. Or go to happy hour and get a drink. I didn’t drink often, but this drinking water ALL the time because I have to (or else!) is frustrating. It’s not a choice any more, it’s a demand.

4) I miss being able to ride my bike when I want to. This sounds weird, but in the past two weeks I’ve only been able to commute by bike once, because I’m afraid that my dizziness is going to be to much and I’m not willing to risk it.

The positives — what I’ve learned (or has been reinforced) from my headaches:

1) My family is incredibly supportive of me. They truly want the best for me. This is the only thing they worry about in my life, which both amuses me and frightens me.

2) My boyfriend is there for me. Whether it’s driving me to urgent care, getting medicine from the store late at night, or just putting up with me, he’s done it all. Today he decided we should go walk around a forest for two hours because it’s what the Japanese do to improve their health. And, despite my misgivings, he managed to get me to walk around, in the rain and humidity, with bugs for over 1.5 hours (when HE chose to go back to the car).

3) I know what a good doctor looks like. Before my migraines I’d go to whatever doctor I could get an appointment with and I couldn’t tell you much of who was good and who was bad. Now I can. And while I’m not that great at it yet, I’m working at learning how to advocate for my own care.

4) I’ve learned that I have excellent health insurance and great hospitals and clinics. Apparently lots of clinics don’t treat someone with a migraine with dignity. I have never been treated with anything less. Similarly, my health insurance is simply amazing. I had no clue how well I was treated until this year.

5) I’ve started reading an interesting set of literature to learn about my health. This involves medical journal articles, web sites, and real paper books. Currently I am reading All in My Head by Paula Kamen. It’s an interesting mix of autobiography and history of headaches and headache treatments. Hopefully I’ll write more about my findings later this week. Through these readings I’m learning fascinating facts and tidbits about my brain and the world of headaches in general.

6) Lastly, I’ve gained a new appreciation for the non migraine days I have. If I wake up feeling good, it isn’t just a good day, it is an EXCELLENT day. All of a sudden I am productive, I can think, and I am normal. These days are fantastic. It makes me smile just thinking that tomorrow may be one of them.

So there’s a news story in the Minnesota papers that’s made it to national news. I first noticed it last week before it was such a big deal.

The basis of the story is this. There’s a 13 year old boy in a town called Sleepy Eye, MN who has Hodgkin’s lymphoma. His story was in the paper last week because he and his family are refusing chemotherapy. Chemo which would rid him of cancer with 85-90% liklihood. Without it, his doctors predict he will die within five years. Last week the court decided it was medical negligence and ruled that yesterday he get a chest x-ray. He got it and the cancer is back to the level it was before he got his single chemo treatment. Today they had a court hearing to determine what to do. BUT…he didn’t show up. And he and his mom are missing. (Which is why this is a national case now…)

From the Star Tribune article: “Anthony Hauser said he last spoke to his wife about 4 p.m. Monday as he milked cows at the family farm near Sleepy Eye. He said his wife told him she was going to leave and “That’s all you need to know.””

So now there’s a warrant for the mom’s arrest in any state and the prosecuter is working to see if he can get the dad put in jail until the child is found. The judge also found the mom in contempt of court and has ordered the boy to be put into a foster home as soon as he’s found where he will get medical treatment. “County officials had “kind of suspected this would happen,””

I read some of the court transcripts last week which fascinated me in a way. The boy is one of eight children in a Catholic household, but his family also subscribes to the belief that natural medicine will cure all.

This wouldn’t be quite so bad if it seemed like the boy was educated to the point where he would seem to understand the decision he’s making…BUT that is not the fact. Unfortunately he’s one of the people that gives “home-schooling” a bad name. From a Star Tribune opinion piece: “When tested by his teacher for entrance into a charter school, according to court documents, Daniel, who had been home-schooled, could not identify the following word: “The.” “

So hopefully the boy will be found and he’ll get his treatment and learn to make decisions for himself.

BUT I want to end this on a happy note, so I’ll send you off to watch this clip of a incredibly functional family. Matthew Amster-Burton is a fun food writer who became a stay at home dad when his daughter Iris was born. He has a new book out called “Hungry Monkey: A Food-Loving Father’s Quest to Raise an Adventurous Eater.” The book is fun, fast, and full of stories and recipes. Matthew and Iris were on CBS’ Early Show this morning. Check out the clip on his blog.